Month: May 2016

Growing up, every morning at the crack of dawn my father would walk up the street and get a copy of The New York Daily News and The New York Mirror. Often, he would cut out tiny advertisements in the back of the newspapers showing hearing devices that promised to be the smallest and cheapest device on the market. As they shared their morning coffee and toast, my father would gently suggest my mother could benefit from one of these devices. She would assert she heard just fine, and that would be the end of story. But my father’s frustration increased over the years as my mother’s hearing loss went from mild to moderate and finally severe in her last years of life.

There were lighter moments too though. We were a family of seven children. During our teen years, one night one of my brothers came home after a tough night and dramatically and with intended humor announced he was going to kill himself. My mother’s response was, “Well you can always have a ham sandwich.” I remember each of us looking at each other and then breaking out into wild laughter. She was a good sport and laughed with us. She knew there was no malice intended. We never did ask my mother what she thought she heard, but that joke has been circulating at our family gatherings for years.

As a small child, I often thought my mother was indifferent. Not understanding the complexities of hearing loss, I thought she was ignoring me at times when I spoke to her. I can remember cupping her chin and turning her face towards to me and saying, “Mommy I’m talking to you!” But hearing loss was a taboo subject that she did not feel comfortable talking about. She came from a generation that equated hearing loss or any disability as being deficient.

In grade school, the school nurse sent home a notice explaining a hearing loss was detected during my annual screening. This test repeatedly indicated something was going on. My mother’s response was that I seemed to be doing well in school, so just leave it alone.

In the early years of grammar school, I was seated in the front center practically eyeballing the teacher. This was the only accommodation in those days. I did know that when the teacher faced the blackboard, I could not make out what she was saying. I also knew that if she spoke quickly giving verbal directions, I had to either ask the person next to me what she said or glance at their notes to see what page she was on. I dreaded assembling in the auditorium for special events as I could never make out what was being said from the stage. If it was a documentary film, I hoped we wouldn’t be tested on it. But somehow, I was a good student and even played the clarinet. Somehow, I’ve always been able to play music by ear, and even earned the honor of first-seat clarinet in the All-City band at the end of sixth grade. But my talents were not nearly as amazing as Nyle DeMarco’s and I don’t think Dancing With The Stars is ready to contact me.

By high school, in shorthand and transcription class, it first really became evident to me that I was missing significant portions of what our instructor was saying as he paced around on the hardwood floor speaking with a strong Bostonian accent.

By the time I went out to work, I was learning how to successfully hide my hearing loss. When starting a new job, I would study the organization’s directory and memorize names, departments and extensions. I knew I was having trouble on the phone, and when someone called I was playing “fill in the blanks.” I learned pretty well how to conceal my hearing loss. Or did I?

Now married and the mother with two children, I started noticing that my five-year-old daughter started cupping my chin and telling me, “Mommy I’m talking to you.” That’s when I went for my first hearing aid at the age of 32. My mother’s response was, “Why did you do that? Now people will perceive you as deaf.” This was not out of unkindness. It was to her a survival mechanism.

I was learning the shame game very well. I would wear my hair over my hearing aid to conceal it. I would not wear it on special occasions and nod my head and pretend I understood what was going on. It was something that wasn’t discussed on the outside. Only my husband and children knew the pain I really felt. Perhaps people felt that was good manners. But I was struggling to hear in groups with family and friends. So I tuned out for over ten years, until I joined the Hearing Loss Association of America www.hearingloss.org, formerly known as Self Help for Hard of Hearing People, Inc. Here, I found people who shared their trials and triumphs and I could finally admit to being a woman who was slowly going deaf.

Sometimes I try to figure out why my mother felt so much shame for her hearing loss. Growing up losing both parents by the time she was 12 years old, growing up with the poverty and despair of the depression era, and navigating the course of her own survival at such a young age may have been just too much for her to bear. It wasn’t until years later when I became a mother myself that I understood why my mother denied my hearing loss. I hoped and prayed my children would not inherit my poor hearing. If they had, then they would have to go through what I have been through. That would have broken my heart. I’m sure my hearing loss broke her heart too.

Years later, I went to a therapist to come to terms with some losses in my life. By then, I had lost both parents, a husband, a job and as much self esteem as I could bear. One day as I was sobbing in his office he asked me, “Why is it that you can talk about any of the losses in your life, but when you talk about your hearing loss, you lose it?” He continued, “You worked your way through college and have had your share of honors. But regardless of all that you have achieved, you have these feelings of “not good enough.” He repeated, “Not good enough.” Did I see myself as damaged goods? Different? Did I feel the sting of shame? Yes.

Getting back to my father, six years ago when he was at the end stages of Parkinson’s Disease, I went to visit him at the nursing home one night after work. A previous stroke had left him weakened, and especially for someone with a hearing loss, I struggled to hear his faint voice. Armed with an FM system to assist me, I listened carefully as he spoke. He leaned towards me and said, “I never knew what you went through until this happened to me.” I knew what he was saying. He was struggling to communicate. He wanted me to know he understood. Coming from a generation that did not talk about feelings, his words touched me. But the look on his face spoke volumes. He wanted me to know that he was feeling the sting of shame, and was sad for me to have gone through the same.

A few years later when I saw my mother’s hearing loss was getting worse, when visiting her, I would use simple phrases in American Sign Language to strengthen our conversations. For instance I would say, “How do you feel?” Or, “Do you feel sick?” Or I would simply tell her I loved her. At first she was resistant to it. She genuinely seemed perplexed as to why I was enunciating my words and speaking. After all, she wasn’t deaf, right? But when she had another stroke and ended up in a nursing home with a profound hearing loss and sometimes unable to speak, she would nod her head yes or no when I signed to her. I would like to believe she finally felt no shame in doing whatever she had to do to come to terms with her hearing loss. I would also like to believe it gave us a little more time to still converse in simple terms.

I found out an uncle in California and one who lived here in the east had a hearing loss. I also found out my great-grandfather on my mother’s side was deaf, and that I have a deaf cousin in Italy.

I always knew my parents were proud of me. But it saddened me that that generation struggled with coming to terms with disability and differences.

So what can we do to come to terms with our hearing loss and stop feeling shame? Self acceptance. Find a little humor in our own human mistakes. Don’t let anyone else define us. Be our own advocate. And remember, hearing loss is just one of the things that makes us who we are.

Let’s hope that with each future generation there is more inclusiveness and understanding so the sting of shame will be a thing of the past.